Kason Rein Tubb

Our son Kason was born May 9, 2014 with  a rare and terminal form of dwarfism  called Rhizomelic Chondrodysplasia Punctata and has no cure. There are less than 60 cases world wide.  Since Kasons birth he has had several surgeries. With the diagnosis comes congenital cataracts, which he had removed when he was 6 months old and has contacts. He had a g tube placed at 6 months of age and when he was 9 months old he was care flighted fo Dallas for an obstruction and had to have an emergency surgery to have a colostomy bag placed.  He also had a broviac in his leg for iv access and soon will have iv nutrition "TPN" along with his g tube feeds.
Any support is greatly appreciated. We have to carry him 2 1/2 hours away from home *Dallas* 2-3 times a week to several different specialist, we have just started traveling to Delaware every six months for a clinicial trial to help prolong his life. We went October 19’ Ang will go again April 20’. With his diagnosis the life span isn't good. We are hoping the trail is a successful one.. He has a rough road ahead and all the love and support is grealy appreciated... God bless each and every one of you....